Don’t Sweat It Walk 2012
As you may know, my son and I are both affected by a form of Ectodermal Dysplasia. This year, we are excited to participate in our first annual Don’t Sweat…
Posted inFamily
Foto Friday- Popeye
You know how Popeye always has his right eye squinched shut? My little Mister does the same thing, ANY time bright lights (camera flashes, sunlight) hit his eyes… <—Exploring Missouri’s…
Posted inHealth
Foto Friday- Skin for Science
Mister and I recently had skin biopsies done as part of a scientific research project, which is aimed at finding a cure for the skin erosion's associated with Hay Wells…
Posted inFashion
The Dress and The Gala
So, I promised photos of my purple dress that I asked ya’ll about… so, here is one of me and Hubs. I decided to go with a black sweater and…
Creative Fundraising for cHAIRity
As some of you may know, I used causes.com on Facebook to raise funds for the NFED for my birthday. I was pretty impressed with the $200 something I raised…
Posted inFitness
Getting Fit- No Sweat
One of the challenges that I face in my quest of Getting Fit is the fact that I am affected by Hay Wells Syndrome (HWS).
Posted inLifestyle
Help Me Help Others Smile
As many of you know, the NFED is an organization that is VERY near to my heart. As one of the founding members of the NFED, I have often thought…
Miles and Smiles Bicycle Ride and Rally
If you have read my blog for any length of time, you have probably read that my son and I are both affected by Hay Wells Syndrome, which is a…
Grace is Enough
This evening, as we were going through our nightly routine of getting the kids to bed, I noted that the thermostat said it was 75 degrees in the house. For…
Posted inReviews
Ima Nobody Becomes Somebody Review
Were you ever bullied? I certainly was. I was different. Still am, and proud of it. But, as a child, being different isn’t necessarily always fun. I am affected by…